tag:blogger.com,1999:blog-8355201357234849984.post6162785912909811253..comments2023-05-14T07:55:15.792-04:00Comments on Looking for Answers for Leah: Leah's Story - Part 1Katehttp://www.blogger.com/profile/01443664163407137299noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-8355201357234849984.post-3731040115780729442012-06-16T15:09:18.875-04:002012-06-16T15:09:18.875-04:00I hope my friend leah gets good soon to!good thig ...I hope my friend leah gets good soon to!good thig she dident colapse in the talent show with me!:)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8355201357234849984.post-7182068632172905272011-08-11T13:46:57.821-04:002011-08-11T13:46:57.821-04:00I'm sure you will already have explored this, ...I'm sure you will already have explored this, but I have M.E. and a number of Leah's symptoms are ringing bells for me :) I really hope you find some answers soon!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8355201357234849984.post-61157403992272817542011-07-12T11:30:12.366-04:002011-07-12T11:30:12.366-04:00I suffer from Cataplexy different from catalepsy. ...I suffer from Cataplexy different from catalepsy. It is a symptom of narcolepsy but can be found on its own. <br /><br />Wiki: "Cataplexy is a sudden and transient episode of loss of muscle tone, often triggered by emotions. It is a rare disease (prevalence of fewer than 5 per 10,000 in the community), but affects roughly 70% of people who have narcolepsy.[2] Cataplexy can also be present as a side effect of SSRI Discontinuation Syndrome."<br /><br />I have very small daily attacks where just my eyes droop, and my jaw stops working as I try to fight it off. Sometimes something like very bad news will trigger a prolonged attack where I am basically paralyzed and unable to communicate. These could last up to 30 min but rarely more than 5. Triggered by emotional reactions like elation, anger, anticipation, and surprise the attacks are difficult anticipate and diagnose.<br />Cataplexy is usually associated with narcolepsy which is manifests it self at puberty and catapexy is almost unheard of with out it. It is also a brain disorder so only neurologists would even think to look at this. <br /><br />Wiki:"Cataplexy manifests itself as muscular weakness which may range from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees, or a total collapse. Usually the speech is slurred, vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. These attacks are triggered by strong emotions such as exhilaration, anger, fear, surprise, orgasm, awe, embarrassment, and laughter. A person's efforts to stave off cataplectic attacks by avoiding these emotions may greatly diminish their quality of life, and they may become severely restricted emotionally if diagnosis and treatment is not begun as soon as possible.[3]<br /><br />Cataplexy may be partial or complete, affecting a range of muscle groups, from those controlling facial features to (less commonly) those controlling the entire body.[4]<br /><br /> Arm weakness<br /> Sagging jaw<br /> Drooping head<br /> Slumping of the shoulders<br /> Slurred speech<br /> Generalized weakness<br /> Knee buckling<br /><br />When cataplexy happens often, or cataplexy attacks make patients fall or drop things, it can have serious effects on normal activities. It can cause accidents and be embarrassing when it happens at work or with friends."<br /><br />There are a variety of treatments depending on the severity. I take a small dose of prozac every day and that seem to prevent most of the little attacks. <br /><br />Good luck with your search.<br />Remember to try and get 2 or 3 opinions and see a neurologists.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8355201357234849984.post-7665646588263357662011-07-12T10:50:06.630-04:002011-07-12T10:50:06.630-04:00Another thought, there is a clotting disorder call...Another thought, there is a clotting disorder called Antiphospholipid Syndrome (APS) - "primary" or Antiphospholipid (APS) - "secondary" (coexists in conjunction with systemic lupus erythematosus). The symptoms your daughter displays are very similar to APS. Best wishes.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8355201357234849984.post-24115320162676398932011-07-11T23:16:04.641-04:002011-07-11T23:16:04.641-04:00The irritable bowel combined with joint pain and p...The irritable bowel combined with joint pain and periods of 'wilting' and neurological symptoms sound a lot like my own experience with Lupus. If you're doing all that blood work anyway, may as well have her checked for ANA and alti-RO antibodies. It took almost 20 years to get my diagnosis. Good luck to you. There's nothing more difficult for a parent than to have a sick child and not know how to help.G'OMalleyhttps://www.blogger.com/profile/17027111191124895992noreply@blogger.comtag:blogger.com,1999:blog-8355201357234849984.post-44950974572974619422011-07-11T22:33:50.545-04:002011-07-11T22:33:50.545-04:00You mentioned that her thyroid levels were high......You mentioned that her thyroid levels were high...has anybody looked into hypothyroidism? A number of her symptoms are similar to hypothyroidism. I understand the enormous cost involved but have you considered an appointment with a neurologist in the US? I doubt you would have to wait 2 years! My thoughts are with you.stephn928https://www.blogger.com/profile/17939289021394072958noreply@blogger.comtag:blogger.com,1999:blog-8355201357234849984.post-6149321664823046402011-07-11T22:00:02.435-04:002011-07-11T22:00:02.435-04:00You must be worried and exhausted. I really hope y...You must be worried and exhausted. I really hope you are able to find some answers.<br />I've had families get the best results when they go to the ER at Sick Kid's. If you haven't done that it would be my recommendation to take her there. Be prepared to wait for hours.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8355201357234849984.post-7150110841357916662011-07-11T20:02:35.214-04:002011-07-11T20:02:35.214-04:00Has your daughter been tested for sticky blood, or...Has your daughter been tested for sticky blood, or clotting disorders? I'm not a medical person but have a hereditary clotting disorder myself, and through my experience and research I know there are some sticky blood disorders that cause problems with vision, gastrointestinal, MS like symptoms, etc.. Clotting disorders quite often go undiagnosed or are misdiagnosed, especially if there is no associated clotting episode. I wish you and your daughter the best.Anonymousnoreply@blogger.com